Fight CRC and CGA-IGC Members Help Advance ICD-10 Recognition for Lynch Syndrome

Courtesy of Fight CRC

We are thrilled to announce that the ICD-10 Coordination and Maintenance Committee has officially established a specific code for Lynch syndrome, while also allowing a path for the inclusion of BRCA1, BRCA2, and Li-Fraumeni syndrome. Please see Fight CRC’s press release for more details.

Thanks to all our members who signed on to Fight CRC's letter to the CDC in support of creating an ICD-10 code for Lynch syndrome.

This represents a critical advancement in the identification, tracking, surveillance, and study of hereditary cancer syndromes. Accurate and specific coding will play an important role in helping healthcare providers, researchers, health systems, and life sciences companies identify genetic and hereditary syndromes earlier and more consistently, ultimately supporting improved care and continued advances in research.

The codes will be fully effective beginning September 2026:

• QA1.71 - Lynch syndrome

• QA1.790 - Familial cancer syndrome with pathogenic BRCA1 mutation

• QA1.791 - Familial cancer syndrome with pathogenic BRCA2 mutation

• QA1.792 - Li-Fraumeni syndrome

While the Fight CRC Genetics and Family History Advisory Council advocated for five separate ICD-10 codes for Lynch syndrome, one for each gene, that request was not approved at this time. However, the establishment of a dedicated Lynch syndrome code is an important milestone, and we will continue to advocate for greater specificity in hereditary cancer coding.

CGA-IGC is proud to recognize the important role our members continue to play in advancing hereditary and familial cancer expertise through national advocacy efforts. We are especially proud that the following CGA-IGC members have helped provide Fight CRC with critical hereditary and familial cancer expertise as part of the Genetics and Family History Advisory Council:

• Heather Hampel, MS, CGC, City of Hope

• Bryson Katona, MD, PhD, University of Pennsylvania

• Elana Levinson, MS, MPH, CGC, Columbia University Irving Medical Center

• Swati Patel, MD, MS, University of Colorado Anschutz Medical Center

• Peter Stanich, MD, Ohio State University Wexner Medical Center

• Jennifer Weiss, MD, MS, University of Wisconsin School of Medicine and Public Health

• Beth Dudley Yurkovich, MS, MPH, CGC, University of Pittsburgh

This milestone reflects the power of sustained advocacy and collaboration, and CGA-IGC looks forward to contributing to this important work alongside our members and partners, like Fight CRC.